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Critical Info for Adults with Down syndrome

Updated: Apr 29, 2022

Highlights from NDSC's Convention from your Couch

The National Down Syndrome Congress has adapted to our current pandemic lifestyles and has converted its summer 2020 convention to a Convention from your Couch! I joined several sessions in June and share some key highlights for adults with Down syndrome and their caregivers. Be sure to check out the NDSC for an abundance of resources.

Here are my biggest takeaways:

  • Parents help bridge the chronological need for a relationship with the developmental age skills

  • 18 Health Issues you should be aware of

  • ACA w/ pre-existing conditions clause incl Down syndrome to be at US Supreme Court Fall 2020

  • Great info and inspiration in adult's pursuit of independence through housing options

  • Be sure to be in the loop to get a copy of the Global Medical Care Guidelines for Adults with Down Syndrome when published in Fall 2020

Read on for impactful lessons from the second half of the Convention:

I Want a Boyfriend (or Girlfriend)

(Terri Couwenhoven, Clinic Coordinator for the Down Syndrome Clinic at the Children's Hospital of Wisconsin)

The challenge is coordinating an individual's chronological age including the needs for social interaction, relationships, and intimacy with their developmental age. Terri covers the topic in 5 steps:

  1. Finding someone who interests you: how do individuals meet others with common interests. Parents/caregivers need to help provide access to social networks as well as boundaries (can't date minors, family, helpers) while being a facilitator, not a barrier.

  2. Assessing interest: learning and practicing flirting to gauge mutual interest.

  3. Spend time together: dating to assess compatibility, trust, respect. This stage requires consideration of transport, chaperoning, privacy, and planning.

  4. Decide if you want to be a couple: through dating, determine if you want to continue to date exclusively or not.

  5. Evaluating the relationship: parents may need to help provide tools for either breakup, problem-solving, or deepening of the relationship.

  6. Ingredients of healthy relationships: mutual interest, deepening relationship, boundaries are respected, and shared power

  7. Reasons to stop a relationship: disrespect, imbalance of power, physical or verbal abuse of any sort, sexually inappropriate behavior, jealousy. Partners should lift you up, not make you feel scared or afraid.

  8. Sexual intimacy: "The need for intimacy is far greater than the need for sex"- David Hinsburger


Common Health Issues

(Dr. Brian Chicoine, Co-Founder and Medical Director of the Advocate Medical Group)

Dr. Chicoine presented a comprehensive look at common health issues for people with Down syndrome. While most parents are quite familiar with common ailments and conditions, some on the list will surprise you. Though Alzheimer's is indeed common among adults with Down syndrome (see previous post), many of the conditions below can cause disorientation, sluggishness, or behavioral changes that can be misconstrued as Alzheimer's. Also, many issues can be psychosomatic (reflecting mental health concerns). Be sure to discuss this list with your loved one and with their doctor to determine which conditions may exist and host to treat them.

Common Health Issues More Prevalent in Adults with Down syndrome

  1. Hypothyroidism (underactive-40% of DS) or Hyperthyroidism (overactive-1% of DS which is still much higher than the general population)

  2. Celiac (gluten sensitivity)

  3. Sleep Apnea (especially due to narrow passages or obstructions)

  4. Hearing Impairment (at a younger age than the general population)

  5. Auto-Immune conditions (Celiac, Type I Diabetes, Hair Loss, Vitiligo, possible COVID-19)

  6. Vision problems (including keratoconus - abnormal lens curvature, cataracts)

  7. Leukemia (especially in kids and adults in their 20's)

  8. Cancer of the testicles

  9. Alzheimer's (higher frequency and earlier onset; see previous post)

  10. Cervical Subluxation (spinal stability when a vertebra slips)

  11. Vitamin B12 Deficiency (often as a complication from Celiac or Auto-Immune condition; can cause behavioral issues)

  12. Gastroesophageal Reflux Disease (GERD or acid reflux)

  13. Constipation (generally movement of food through the GI tract tends to be "sluggish"- drink more water, eat more fiber, exercise regularly)

  14. Skin infections (boils, fungal infections eg toenails, dry skin)

  15. Osteoarthritis (at younger ages in joints and hips)

  16. Obesity (exercise regularly and eat less processed carbs)

  17. Respiratory infections (pneumonia, possibly COVID-19 complications)

  18. Secondary Disabilities (eg, when obese, can have poor hygiene)

Less common in DS: Hypertension (hi blood pressure), coronary artery disease (heart attacks), cancers (breast, colon), type 2 Diabetes.

Biggest takeaways:

  • Eat balanced meals in proper portion sizes

  • Move - exercise regularly

  • Hydrate often

  • See a doctor regularly; ideally, one specializing in Special Needs Community health

Resources: Advocate Health Resources and Library

What's Happening in DC

(NDSC Policy Team)

NDSC is extremely active on many fronts impacting the lives of adults with Down syndrome:

  1. COVID- lobbying for bills with enhanced relief benefits including enabling caregivers in the hospital

  2. Home & Community-Based Services- funding is sorely lacking in each state and is going to get worse with COVID-related public funding issues

  3. ACA- working to preserve pre-existing conditions clauses in ACA or subsequent plans as this applies to Down syndrome coverage. ACA will be in front of the US Supreme Court in Fall 2020

  4. Post-secondary programs- the number of college programs for special needs adults is now 295 since its inception in 2007! See for info.

  5. Minimum Wage- working with many agencies to eliminate SUB minimum wage with a smooth transition to competitive employment practices.

Home is Where You Hang Your Hat

(Denise Gehringer & Guests)

This is my favorite topic since it represents the essence of independence. People are happier when they are involved in choices affecting their own lives. Lots of good information from the panel. First are some shocking statistics:

  • 7.37M people in the US with IDD; 83% do not receive public funds for residential!

  • Balance (1.2M) receives public funds to support living at home (10%), in provider-controlled facilities (5%), or in consumer-controlled settings (2%)

Living options:

  1. With parents, siblings, other family

  2. Shared living in the family home (back house)

  3. Group Home (w/ others included caretaker)

  4. Traditional apartment (no support system on campus)

  5. Consumer-controlled community apartment (w/ support systems; may qualify for subsidies)

  6. Cottage/Ranch community

  7. Consumer-owned home (with support services)

  8. Assisted Living facilities (like elderly care)

  9. Skilled Nursing

  10. Developmental Centers (traditional "institutions")

So a wide variety is available in many larger cities. Selection depends on advocates' capabilities and dreams. Make a list of necessary skills and work to develop them from childhood.

Location, nearby amenities (grocery, shopping, entertainment, work), and/or transportation options (bus system or door-to-door) are critical considerations.

Everyone should consider long-term sustainability of any housing option. The panel shared stories of challenges when parents died or were unable to care for themselves so the advocate faced loss and an immediate need to move. This double event is often very traumatic.

Each state manages its own benefits through a Medicaid Waiver program. Nearly all states have waiting lists that can be 20+ years so get on the list early. In all cases (w/ possible exception of CA, AZ) you start over on the list if you move states. See Medicaid Waiver for other state info but be sure to check with each state you are considering.

Additional Resources: Families Together and see Mimi and Dona movie!

Global Medical Care Guidelines

(NDSC with Dr. Brian Chicoine)

A critical new document, Global Medical Care Guidelines for Adults with Down Syndrome is due out this fall. This work is the compilation of many well-respected members of the medical community and Down syndrome support organizations like NDSC. This report is a must-have for families. Though some of the material may be too technical, it will prove invaluable to pass on to your advocate's health care team. Don't assume your doctor (whether part of a Down syndrome or special needs clinic or a general practitioner) is aware of common health risks or critical questions and tests to run for adults with Down syndrome. Keep in touch with NDSC and/or the Global Down Syndrome Foundation to ensure you get a copy this fall!

Your comments and questions are welcome on our Facebook page or by email.

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